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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 6

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 3

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 10

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0


SO SICK OF IT ALL

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SO SICK OF IT ALL

Post  Aussie on Wed Mar 30, 2011 4:36 am

Today I am in pieces, I keep having to fight off the tears. My first wedding anniversary is coming up and although I can now have sex without pain. It won’t be the same.

I think maybe I am just having one of those “feel sorry for myself” days but I am starting to notice when ever anyone complains about something “normal” eg a stomach bug, cold, sore toe, whatever…I feel like shouting in their face “at least you know that will go away, I don’t know If I will be stuck with this pain for the rest of my life” but I have to keep it secret, because they wouldn’t understand anyway.

I just feel like a huge bomb has been set off in my perfect life. I was so blissfully happy perfectly healthy just got a new job, just got married and then BANG someone decided to make me hurt, in the worst possible place.

I know it’s just because I am having a bad pain day but I am sick of the rollercoaster of “it’s not so bad – it could be much much worse” and “why has this happened to me, I don’t want my life to be like this, my relationship will go down the pan etc etc”

I just want to get off.

I feel like I am perhaps, wasting my time with doctors and treatments as I do not know anyone that has gained full relief from any treatment. The doctors don’t know enough and keep trying things but we all get caught up in the pain in the middle of it all. I actually feel like a lab rat sometimes.

Sorry to put a dampener on everyone’s day but I am hoping someone will have encouraging words for me today… I really need people that understand and don’t just pretend to. How do I get out of this frame of mind.? I am trying to fight the negative feelings today but just want to cry and give up and sleep. I am so tired of it all.


Claire

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Re: SO SICK OF IT ALL

Post  Sebby (Admin) on Wed Mar 30, 2011 7:27 am


Firstly *Hugz*

This is exactly how we get on a bad pain day, it is as if the pain penetrates into every part of the mind and every part of your life.

Sometimes If im having a bad day I just think "stuff it, i'll have a bad day" in other words I dont fight the feelings with endless positive thoughts I just have a good cry, wrap myself up in a blanket and curl up. Easier done if you dont have anything to do that day or any work but if you can do it then do it! Put on a dvd or listen to music and just rest!

Also if you do have to go out today try and focus on what is going on around you, to distract from what is going on within you. Notice the flowers, the people, focus on a converstaion etc have something wonderful to eat and drink and take one moment at a time.

Also what do you mean that you can have sex without pain but it wont be the same? Is it that you feel you have lost the sexual part of you? that it is always going to be shadowed by the thought "but what if it hurts today?"

You can work on getting your sexuality back but it will take some time. We are here for you every step of the way hun. Im off to work now but will check in when I get home








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Thank you

Post  Aussie on Wed Mar 30, 2011 9:24 am

Thank you Sebby, for your kind words, you made me smile.

I had to work today which meant I couldn't curl up in bed as much as I wanted to. I don't have bad days on weekends because although it's still there. I don't have to sit down....so I don't Smile

Really nice words and advice here, just reading through your message again. I think I will print it off to remind myself I am not the only one who has poo days.

You hit the nail on the head with the sex part. It won't be the same as this time last year because of everything we have been through this year. I just got angry that this had to happen and disrupt my perfect little blissfull bubble of a life where everything was wonderful. I have had a bad year in all though, lost two grandparents and a friend in the space of a few months. Ontop of the v. Sitting on that plane back to England for my Grandpa's funeral was a nightmare - at least I got to see him before he died though some people are not so lucky.

With the sex the anticipation of pain ruins it really and the fact I have to concentrate so hard on relaxing sometimes takes the enjoyment out of it, other times it's like I don't even have v and it's great. I am happy that I can finally do it now though at least for relationships sake if not my own pleasure (lol)

Poor Hubby, the countless tears he has had to put up with this year. I don't think he signed up for this, I was fine untill I got a yeast infection 2 months after we got married.

Meh, I guess people have it worse than me.

Claire


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Re: SO SICK OF IT ALL

Post  Sarah001 on Wed Mar 30, 2011 11:25 am

Bless you Claire, we all have days like that so don't feel bad for letting off some steam. And don't think you're not going to get better either, remember Isa Herrera said it's all part of the battle to believe you will recover and be positive. Also there are people who get complete relief and as you've come so far and can now have painfree sex most of the time I see no reason why you couldn't achieve that all the time. It's a temporary glitch in your marriage and what you should be celebrating is how well you've chosen and the fact your husband has stood by you through it and your marriage has to have reached a much deeper level than the physical for that to happen. We change over the years and good relationships are about so much more than just sex and you are one of the lucky ones to have found a partner who stands by you through thick and thin. So celebrate that and keep going with your treatment, soon enough you'll find relaxing that pesky pelvic floor is second nature! Practice makes permanent! Wink
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Thanks Sarah

Post  Aussie on Thu Mar 31, 2011 3:37 am

I emailed you but you didn't reply, hope everything is ok with you. Doing much better today. Thank you for making me feel positive about my relationship he isn't half bad really. I am just wondering if it is relaxing I need because when I do my stretches it burns/stings. I have only actually started feeling almost pain free since I STOPPED stretching so much. It seems that the skin gets irritated when I stretch it. I was wondering why I was not making so much progress untill I stopped doing it as often. On the days I do do it I have more pain than on the days I don't. wierd.

Thanks again for support x

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Re: SO SICK OF IT ALL

Post  noni on Thu Mar 31, 2011 4:20 am

Hey Aussie,

Dont fret, we have all been there. I get into my moods/low points at really bad pain days. And Sebby is right, the pain infiltrates all aspects of your mind and just takes over!

Hang in there, we care about you on here. So be good to yourself!

Love,
Noni
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Re: SO SICK OF IT ALL

Post  Sarah001 on Thu Mar 31, 2011 11:16 am

I've just rechecked and I haven't got an email from you Claire or I'd definitely have answered it, the last one I've got in my inbox is from March 24th. Are you sure it sent ok? Question
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Re: SO SICK OF IT ALL

Post  Aussie on Thu Mar 31, 2011 11:58 pm

yeah it sent fine. Oh well we will start again. I will email you with updates of my physio next Thursday x

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Re: SO SICK OF IT ALL

Post  Sarah001 on Fri Apr 01, 2011 11:58 am

Look forward to it, hopefully the email will reach me this time!
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Re: SO SICK OF IT ALL

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